Questions regarding course of action...

morning,

I have suffered from migraines with aura since 13, I have had two concussions, one serious with amnesia. 7 years ago I had Transient Global Amnesia after a strenuous workout. It resolved within 8 hours. After that I would have episodes that were thoughts that I tried to follow, like a dream, I once had an unpleasant smell. After one episode, I drove home and did not remember the drive. These occurred only after a heavy upper body workout. Pull-ups with the last few assisted. I have seen a neurologist, have had several MRI's and EEG's, all normal except white matter consistent with chronic migraine. I was medicated with topamax and Lamictal, individually. I became manic on Lamictal and had too many cognitive issues with Topamax. My neurologist thought that they might be migraine variant. I learned to reduce my exercise and minimize the events. I surf and swim and now have had episodes lasting three seconds after those exercises. I went to an epilepsy center that wanted to do another MRI and the video EEG. The physician thought it probably was TLE and a reflex seizure. I refused the studies because of the determination of the MD to medicate me for the episodes. I have had three lasting 3 seconds in the last year. He also was not going to try and produce the episodes. The thought of sitting in a bed for 2 to 5 days was difficult to wrap my head around, and after having had such terrible reactions to seizure meds...I have also reacted to meds as minimal as singular and Chantix.
To my questions, what are the chances these could become more than what they have been in the last 7 years? Would medication be an absolute if diagnosed with reflex seizures? TLE? From my understanding, medication is not usually effective with TLE.
I've posted this three places, I think I finally found the correct one! First time on any forum.

Welcome to the forum! I've had TLE for 44 yrs. and take my word it sounds like you may be having absence seizures along with aura seizure also called simple partial seizures. Just like you I've had a concussion and yrs. ago I started having migraines and the migraines led to seizures. To much stress and lack of sleep are the 2 main things that can trigger seizures for a person. If I may ask after you have had any of these possible seizures do you have a headache or feel tired? If you did then it is seizures. You should see an Epileptologist (Dr. specializing in epilepsy) you can see them at an Epilepsy Center. These Drs. can pinpoint the cause of your seizures and find the correct med for you. I had a DNA test done and found I was drug resistant to all seizures meds out on the market right now so my Dr. had me using medical marijuana (CBD) and it has helped me a lot. You may want to try taking vitamin B12 once a day, cut back on the starch and carbs and stay away from nutra sweet.
Keep track of your possible seizures write down what time they happen on a calendar and write a description of the seizure by doing this the Dr. may be able to see a pattern in your seizures. I took Topamax and that triggered more seizures for me, Lamictal caused me to break out with a rash. I know you don't want to but I would go through with the video e.e.g. and also ask the Dr. to do a PET and SPECT scan on you these tests show a lot of detail. I wish you the best of luck and May God Bless You!

Thanks Sue,
I'm glad for your input. I will go through the testing, just not at the epilepsy center I first went to, no connection with the Doctor. There is one closer, and I am waiting to get a recommendation as to which Physician to see. My seizures are easy to track. Only three this year, all precipitated by exercise, where in I use my arms, usually after pushing myself too hard. Swimming for 30 minutes straight freestyle for example. I assume that having reflex seizures only is rare, precipitated by exercise also infrequent. Mine are worse if I really go all out, that is when I have the loss of memory. I haven't had that for a few years, I've learned how much I can do and now they last only seconds. No headache, no tiredness afterward, just panic and sadness. I live in Florida and my life centers around the water, the doc I saw acted as if I didn't take meds, I was headed for something worse and I would drown etc. I believe he was just trying to frighten me. Did your seizures escalate over time?
I 've actually accepted that mine are seizures, I am interested in the fact that your doctor used a DNA test to determine your ability to take meds. I think I am more fearful of them than anything! I am divorced 4 years ago, live alone, kids up north. If I take a med that makes me crazy, I guess the dogs will be in for a good show!
What type of seizures do you have? Have they become worse over time? Again thanks for your response, compared to others, my issue seems minimal, hope it stays that way!

Hi Michele,
I love Florida I had family in Zyperhills but they are gone now. I would love to live down south so I don't have to deal with the winter. I have absence and complex partial seizures and sometime
I will have a simple partial (aura) seizure. I started out having seizures at 10 yrs. old and they were only absence seizures but my Dr. couldn't control them and that in turn left more damage on
the brain and that's why I have the complex partial seizures now. I had brain surgery in 1994 and that help reduce my seizures a lot and it was well worth it. I have found since then I have more
seizures in the fall and winter compared to spring and summer and that's do to the lack of serotonin in the fall and winter. Some people are just the opposite and have more seizures in the spring
and summer. I live in central NY right by Cornell University so I live in an area where taxes are sky high and I want to get out of NY point blank, now if I could only get my husband to go also.
I'm sorry you have been divorced and I wish you only the best. In regards to the DNA test tell your Dr. to do one on you and if they tell you no or "what are you talking about" then just tell the Dr.
that you will report them to the medical conduct board in your state and take my word they will do the test. All they do is take a few tubes of blood and then wipe the inside of your mouth with a q-tip
all of that is sent to the lab where they can see your body chemistry and the amount of enzymes in your liver. After seeing all of this than can match you up to the best seizure med with the least side
effects. Many Drs. say they don't do this because they are making money pushing meds to a person and the more med the more money they get from the drug co. Feel free to ask me any questions
any time. I wish you only the best and May God Bless You!

Sue is our expert, and, as always, she has provided you with excellent advice and guidance.

Uncontrolled seizures can result in increased seizures, changes in seizure type and duration. Most neuros consider Anti Epileptic Drugs (AEDs) as the first line of defense for seizures. Sue is spot on that many of them are connected to the pharmaceutical companies selling the drugs. In my experience with my sons, many neuros have seemed lazy or disinterested in finding alternative means to control seizures. "Here, try this," is what we heard most often.

It's great to hear that Sue is responding well to CBD oil, and that would be my first line of defense, if I could start over with my sons, who ran/run the gamut of seizure types from absence and Gelastic to tonic clonic.

If you have the video eeg, it might be helpful if you do some exercises, while being tested, to see whether that induces a seizure. If you don't have seizures, when at rest, but only upon exertion, you might not get an accurate result from the testing.

AEDs do have many side effects associated with them, as do all pharmaceuticals, including Chantix. I've seen the TV ad for Chantix thousands of times, and seizures are listed as a possible side effect. Perhaps you can examine when you took Chantix to see whether it correlates to your current symptoms.

Your dogs may be able to sense when you're having an aura or a seizure, so heed whatever warning they might give you.

Driving and swimming pose dangers for people, who have seizures. So, your neuro's concern was justified. That you were able to drive home without an accident after a seizure is a blessing, and not being able to remember driving is a caution.

As Sue mentioned, stress reduction and sleep are important. So if you are having issues with either one, you might want to consider counseling. Divorce is quite stressful, and sometimes expressing that stress to a professional helps to relieve the pressure.

Healing involves mind, body and spirit. Be sure that you attend to each one.

I hope you are successful in locating a neuro, who will listen to you and offer you options beyond AEDs.

Sending healing positive energy your way ~

Love & Light,

Rose

Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

Rose said, "If you have the video eeg, it might be helpful if you do some exercises, while being tested, to see whether that induces a seizure. If you don't have seizures, when at rest, but only upon exertion, you might not get an accurate result from the testing."
I was in Barnes Jewish Hospital in St. Louis for a VEG. They reduced my meds and waited for a seizure...... when that didn't happen they carefully loaded me and all my wires and took me into a room with exercise equipment. When I was worn out they took me back to my bed and I had a TC within minutes.

update on seizure issues

Rose said, "If you have the video eeg, it might be helpful if you do some exercises, while being tested, to see whether that induces a seizure. If you don't have seizures, when at rest, but only upon exertion, you might not get an accurate result from the testing."
I was in Barnes Jewish Hospital in St. Louis for a VEG. They reduced my meds and waited for a seizure...... when that didn't happen they carefully loaded me and all my wires and took me into a room with exercise equipment. When I was worn out they took me back to my bed and I had a TC within minutes.

Thanks Rose,
As an update, my most recent MRI showed White Matter Disease originally thought from chronic migraine.It also showed an old frontal lobe transcortical infarct. No temporal lobe abnormalities. I am scheduled for the video EEG and an MRA, carotid doppler also, coag studies. So... I'm bringing my own weights for the video EEG, since I don't believe exercise is on their agenda. I have had all these studies five years ago and they were negative, except for the video EEG. It seems though that the cause of my seizures is vascular in nature, migraine is a vascular disease so that coupled with a history of smoking, quit many years ago except for a brief period during my divorce. At that time I was medicated for the seizures and was extremely hypertensive as a result. Could have been the cause of my infarct...So it's a wait and see situation now. I will have to weigh the pros and cons of medication, I would love to be able to surf and swim again, workout without fear but on the other hand, I am extremely fearful of the medications used to treat epilepsy. I have had no issues with memory loss ( the one time I drove and did not have memory of it) since I know how far to push myself during workouts to avoid episodes.
I am quite aware that compared to other patients with epilepsy, mine is a minor form, it's just that I have done everything to be healthy and yet here I am. Thank you to those that have responded, I am very grateful!
Michele

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